Balance and Tightropes

A hush falls over the crowd. Lights are dimmed and all eyes in the big top are fixed upward. Suspenseful music keeps everyone in a trance where they don’t dare look away. A man dressed in a white leotard and a billowing white blouse inches across a wire. He holds a long pole stretching out at each side to help establish some sense of equilibrium. Finally, he makes it to the other side. The man bows dramatically to the applauding audience below, but he isn’t finished. He attaches a small round disc to a pole that rises up over his head. An equally bedazzled woman climbs onto his shoulders and positions herself on the circle where she exhibits grace (as well as a lot of trust to her partner) while performing carefully orchestrated yoga poses while the man makes his way back to where he started. The two execute a carefully choreographed dance in a beautiful example of synchronicity, faith, and above all else . . . balance.

Tight rope walkers balance beautifully and skillfully. Their world is high above on a thin steel wire. They make their work look effortless. From below, their balancing act is often stressful to watch.

Our tightrope walkers take their time because it matters to be careful and pay attention to detail. It takes training to do it right. It also takes training for us to walk our metaphorical tightropes successfully. Finding balance in day to day life can be as challenging as on the hire wire.

Finding balance is all about figuring out what you value and then aligning your activities and time spent on those values.

I am clear on what I value and have successfully matched those values to chosen activities. It’s tougher to manage my time so I stay balanced and am not overwhelmed.

Finding balance while living with cancer challenges me almost daily. It seems these days treatment and health appointments are scheduled almost weekly. I spend time on some aspect of fundraising for more metastatic breast cancer research almost every day. Focusing on it can consume a lot of my time. It is exciting, worthwhile, and entirely my choice. It also stresses me out.

How do I fix it? I won’t stop my fundraising efforts. I am getting good results even though it is taking a lot of time. Hard work and effort yield positive results. The solution could involve less blogging, but I don’t want this to be the case. Oncology medical stuff gets a lot of my time. Both blogging and fundraising are taking the majority of the time I have left. I’m not balanced. FYI – if there is a week where I do not post, I am more than fine. It means I just needed a break. Something has to give. It isn’t going to be me.

Spending more time in nature is going to be a conscious effort on my part.

Reading is going to be scheduled, which makes me feel a little too structured, but I need to do it in order to create more balance.

Working out will continue to be a priority.

I am going to schedule downtime and just BE.

Doing some sort of meditative practice again will help. Even if it’s only five minutes a day, the benefits will affect everything else.

Accepting help will also be good. I can think of two examples where I recently did this and I was okay not controlling everything.

One powerful word that I’ve found to give me more personal balance is the word NO. Leave work at work. Respectfully decline an invitation if you have no other plans than not having any other plans. It’s perfectly acceptable to say no without having to explain or justify your reasons. Not explaining is freeing. It goes something like this: “No, I can’t make it. Thank you.” It’s polite and firm. It’s worth asking why anyone really needs more information if you have already said no.

“Balance is not better time management, but rather better boundary management. Balance means making choices and enjoying those choices.” ~ Betsy Jacobson

Holding boundaries I have set with others will absolutely help me achieve more personal balance. Boundaries define what I will accept from others. They reflect how I show love to myself. When I apply the idea of boundary management to myself,  I still believe there is time management involved. How I choose to spend my time and energy is important.

Balance is a mixture of boundaries, priorities, choices, and time. How much of my day is reasonable to dedicate to writing and fundraising? My plans are to exercise in the morning, do whatever my work is that day in the afternoon, read at night. Yes, I’ll need to be flexible, but one day isn’t going to be consumed by anything – unless it’s a medical day. Those are still pretty consuming.

Squirrels know how to balance really well. Those darn creatures scamper across telephone poles with speed and ease. What makes this so? Does the squirrel lead a balanced life? I’ve always thought it must be rather monotonous. All they do is dig and bury things, chase one another, and run on wires. They dash out into roads and dart out of traffic just in time. They try to get into my squirrel proof bird feeder to no avail. Is this the squirrel version of work, play, and risk-taking? Maybe they have it all figured out.

I don’t think squirrels know more than I do. My brain is considerably bigger. I think the telephone wire is much like the sidewalk. It’s all proportional. I don’t fall off the sidewalk just as the squirrel doesn’t fall from the wire. But I still feel like I lose my balance from time to time.

We all lose our balance. It’s inevitable, and when it happens, it’s important to reset to your own vibration and needs and not to someone else’s. A person living well with cancer will be balanced differently from someone else. I know I keep searching for an answer on how this best works for me. It changes a lot.

The goal of finding balance is not to be a tight rope walker walking without a net and balancing someone on your shoulders while juggling bowling balls. The goal of finding balance should be to be mindful of what you are choosing to do with your time and feeling a lightness with those choices. I want to stay in that space where balance and lightness meet. Some call it peace. Some call it happiness. Some call it breathing. It all circles back to loving self-care so you don’t have to feel like you’re walking on a tightrope. Leave that balancing act to the professionals.

Good News

How often does a metastatic breast cancer patient get good news?

I imagine it varies. Writing from my experience, I don’t get good news that often. Bloodwork has been steady and decent. Stability is considered good news. Stability or slow growth is usually how news is presented as “good” in my situation. I want more. I am thankful my news has been mostly good over time. Initial lines of treatments were highly successful. Mild, minute progression was the usual result when these stopped working. Millimeters. Sometimes these millimeters weren’t even considered medical progression. They sure mattered to me. Millimeters add up over time.

Millimeters crush my hope.

I’m still able to do many things. I am active. I’m independent. I also know others have received news much worse than mine. Grief weighs heavily on me when I learn that someone I know in person or online isn’t doing well or has died. That last piece is a huge reason why I don’t share news, good or bad, on social media platforms. Someone always is struggling and the timing never feels right. I don’t share much health news online.

What happens when I do get good news?

I don’t trust it.

I must not understand it.

I don’t allow myself to feel joy because I have to keep myself in check.

It will be taken away if I get excited.

It won’t last.

MBC has done a number on me.

I hope for good news. I pray for it. I try to do whatever I can to tip the scales in my favor. I also have fears and have been conditioned from too many similar reports of minor growth to not expect that is what I’ll hear. Patients with metastatic breast cancer don’t get a lot of good news. I imagine our oncologists don’t get to give it to us very often either.

Well, I got good news. Whatever is ahead of me, this good news can’t be taken away. I understand it. It wasn’t a mistake or some fluke. I held off in getting too excited until I had a face to face with my oncologist to see if our definitions of what good news meant were the same. We are on the same page.

I am feeling joy. I get to feel joy.

My October 2019 scans showed regression.

My largest spot is now a little smaller than it was in 2012 when I was diagnosed.

I have waited YEARS for this kind of news.

Millimeters also make a difference over time when they are being subtracted.

If size is the only thing that matters, then I have regained ground to where I was over seven and a half years ago. Size isn’t the only thing that matters, but that is how I’m framing my thoughts. There are other factors, especially the physical and emotional tolls of treatments, retiring early from teaching, the never-ending obstacles of living with MBC, etc. All news is not golden in my life. Bad news has been hard. These all have had major impacts.

Research also has major impacts.

Research works.

Trials work.

My privacy has always been something I want to protect, and I will continue to be a private person. Privacy is the other reason I do not share much publicly. When others share good news, I always find myself wanting a little more information so I can assess if I may be eligible for their protocol and have a chance for the same kind of good news. This is one time where I will share more details. It may help someone.

I have been participating in a phase 2 trial since February that I was matched with through Foundation One. Foundation One is a lab that does in-depth genomic testing that (as I was told) goes deeper than what genetic testing through my treatment center clinic involved. It looks for mutations. Most of the time mutations are not found. If there is a mutation, there hopefully is also a trial that would target that mutation, as there was for me.

The cancer in my body is identified as estrogen positive, HER2 Neu negative. An activating mutation of ERBB2 (Her2 Neu) gene was identified. This means I do not have too many of the Her2 Neu genes. Having too many would be an amplification and make me positive. I am negative. The issue is the gene is OVERACTIVE and doing the wrong thing. The overactive aspect can be targeted.

I also have a mutation presenting as a variant of ESR1 in my hormone receptors. It is a variant of an estrogen receptor that is not active and therefore means the receptor is ON all of the time. People do not respond well to aromatase inhibitors where this is true. A mutation here explains why previous lines of treatment stopped working or haven’t worked as well. This mutation can be targeted as well.

Herceptin, neratinib, and faslodex are targeting both these suckers.

I’ve traded one batch of side effects for another set. Some have stayed the same. I’ll push on and keep doing everything I can. I pray I can stay on this regiment for the long haul and that it keeps doing good work.

Cancer acts differently in everyone. It can still behave differently in those of us with the same type. I hope those of you in similar situations get good news, too. We all need good news.

There is more work and research to be done, for myself and for others.

Research gives me hope.

I live in hope.

Dodgeball

I was consistently the next to last child to be picked for teams back in grade school when that was still deemed an acceptable way to form teams in physical education class. I’m not sure what great minds came up with it or chose to enforce it year after year, but I was reminded a few times weekly of my low skill level with little intervention to teach me what I failed to figure out on my own.

Dodgeball was always a popular game back in my youth. I never lasted very long as a player. I wasn’t expected to, and it was a group game where no one expected much of me. It was a game for the tough boys who took no account for their classmates as they knocked others out one by one. The game incorporated agility, coordination, running, jumping, catching, throwing, and of course, dodging. I did none of these things well. I quickly was pegged out and spent most of the time watching those who the game was made for strut their stuff and whip balls at one another with a force and meanness that communicated you better not mess with them.

There were two sides. Catching balls or hitting someone with one sent the intended person to the prison. There were three bowling pins that needed protection. These marked the far border at the end of your team’s side. The game was over when either the opposing team had knocked down those three pins or all of the players had been knocked out due to their lack of dodging or thrown balls had been caught. Those in prison could be set free if someone lobbed a ball over all the others and someone on your team in prison caught it.

There is one distinct memory I have of dodgeball in gym class from about the sixth grade. Somehow, I was the last player standing on my side. It wasn’t due to skill on my part. I just hadn’t been knocked out yet. The other team had everyone still playing. None of their players were in prison. The sides usually weren’t ever that uneven. How was this scenario possible? But I was alone and had to guard the one remaining pin. I was an underdog if there ever was one.

Most of the balls were on my side. The other side had two left. Out of kindness, they waited for me to get into position before deliberately firing a ball at me. It wasn’t a great strategy on their part, but whatever. Although not an athlete, I was a smart cookie even in my youth. I positioned myself in front of the remaining pin and squatted down like a catcher behind home plate. I was going to protect my pin and in doing so make myself a smaller target. I held out my arms and waited for the incoming balls.

They took turns throwing the ball straight at me. Why? Dodgeball is not a polite game! Another tactical error on the other team’s part. It prolonged the game. I wouldn’t be able to catch two balls at once, let alone one. Ball one came straight at me. It hit me and my arms instinctively wrapped around it. I caught it! Unbelievable!

There was only one ball left. The gymnasium was quiet as the second ball was thrown straight at me.

By some miracle, I caught it again!

All the balls were now on my side. Two of their players were in prison. One pin was left standing. It was up to me. My next move would either free everyone on my side and extend the game or end it by another player catching my attempt.

The game ended.

I learned a few things that day.

Use my head.

Play strategically.

Never give up.

Do my best.

I learned I could catch things other than colds and drifts.

Fast forward to the present. Lately, I feel like I’m in a game of dodgeball with a few stressors that inconveniently want to converge all at once. Appointments. Scans. Social opportunities developing all at the same time. A broken water heater. Appointments rescheduled. Several excellent fundraising opportunities and all the work to put into their details to favor their success. Any moments I think I have carved out for me, somehow disappear. Keeping up with regular household responsibilities frustrates me because they just never end.

I dodge.

As soon as I dodge one something, another two or three materialize. I never get ahead.

More dodging.

I have learned how to dodge like a professional.

Dodgeball isn’t a team sport. It never was for me. My memories of it, of physical education class in general, showcased the natural athletes without really taking time to teach the rest of us.

I can dodge today until the cows come home. I have acquired high skills in avoiding topics I don’t want to discuss by switching topics, diverting attention, and being honest that I don’t want to talk about something and won’t talk about something when dodging fails. Dodging doesn’t get me where I’m going as quickly if I’m ducking to avoid being hit by incoming matter.

Dodging isn’t my game. I don’t like people throwing things at me. I am not a runner. I am still a pretty good catcher. Time should not be spent dodging or preparing to be hit by intentionally thrown objects whether those objects come in the form of words, behaviors, or round rubber gym balls.

Dodging doesn’t give me what I need.

I need more uninterrupted time for me.

How?

I work out. I can focus on self-improvement one hundred percent whether strength training, working on flexibility, agility, balance, functional movements, and other realms of fitness. I build on what I know how to do, challenge myself, meet goals, and repeat.

My friends, reading, writing, exercising, and delegating tasks are all effective moves I have to dodge stress. Even doing something new is a way to reset. Giving myself some structured quiet time, watching a candle flame blur, listening to music, and meditating are almost forgotten luxuries that simply need to be prioritized again.

We all need to find ways to dodge life’s stressors and find that priceless time to dedicate to our well-being. Being on guard in a perpetual game of dodgeball is not a healthy choice. Waiting to be taken out by the next ball cancer whips at me is not how I am planning to spend time. I will not be tense, stressed, and feel like I am always dodging some unknown or dreaded event. It is tough for me to escape mentally. My fear reflex flinches almost daily. I have better things to do. Dodging keeps me away from what I want to do.

It’s funny when I think back to that moment in gym class when it was up to me to decide what would happen next in the dodgeball game. I really thought I had a chance to get the ball to my teammates. I did have a chance, just not a good one. Many instances mirror that in real life, especially when living with cancer. I believe I still have a chance. Belief motivates. Belief sees me through. No longer a child, I am stronger now and not as afraid of being hit with an incoming ball. I hope not to flinch as easily as I move forward. Sometimes I will dodge, and sometimes I’ll hit my targets with precision and force. It’s time I hurl balls at a few things I’d like to knock out of my way. Offense is a good defense.